My Fourth Miscarriage

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My Journey
Fingers Crossed for 2021

I’m determined to put our entire journey down on paper.  So, I am forcing myself – mentally kicking and screaming – to tell the story of our fourth miscarriage.  But if the theme of our third loss was compounded grief, due to the concurrent loss of our cat, the theme of our fourth loss would have to be ignored grief. So ignored, in fact, that my husband barely remembers the pregnancy at all. 

Our fourth pregnancy was not necessarily an accident, but it was a surprise.  Our third pregnancy had ended just a few months prior and had been carefully ‘manufactured,’ with regular ultrasounds leading up to ovulation, a trigger shot, and a prescribed conception window.  This pregnancy felt almost natural to me by comparison. 

I didn’t want to tell anybody.  I wanted it to stick, and I was afraid that just speaking the words “I’m pregnant” would somehow jinx it.  As if I were being given a test like Lot’s wife in the Bible – if I vocalized it, I would turn into a pillar of salt.  But I did tell people.  I told my immediate family.  Like I always did.  Like I always would.  My mom was the first. I confessed my condition to her through hysteric sobs.  I say “confessed” because that’s what it felt like.  For the first time, the words “I’m pregnant” were more fearful than hopeful.  I was terrified I would lose the pregnancy and I was ashamed.  Ashamed that I wasn’t excited, and ashamed in anticipation of a loss.

I was supposed to leave for a business trip to Europe the following week, so I called my clinic and they brought me in for a blood test to confirm.  The morning of my departure the clinic called to inform me that my levels low.  They told me the pregnancy would not progress.  My husband was already at work.  I couldn’t even see him to tell him in person before leaving. 

I admit that as I type this I am thinking, “Why didn’t I just cancel the trip?” In retrospect it seems obvious that I was experiencing trauma and that it would have been fully appropriate to call my boss and my supplier and tell them I couldn’t come.  I didn’t.  With a false rationality, I told myself that there was nothing I could do about it (true) and that my cancelling wouldn’t change the outcome (also true).  I know I didn’t want to go through the hassle and embarrassment of explanations, but I also think I didn’t want to admit to myself that I was upset.  Wasn’t it the exact outcome I’d expected?  Wasn’t I mentally prepared?

I boarded the plane and flew to Germany, but I kept taking all my medications.  I specifically remember giving myself shots of blood thinner on the plane.  It was always like this with me.  I was certain I would lose my pregnancies, but then when doctors would actually tell me they weren’t progressing, I was convinced they were wrong.  Maybe the real reason I didn’t cancel the trip was because I didn’t accept that the pregnancy was a loss.  Afterall, I hadn’t started bleeding. Maybe, just maybe, there was a miracle waiting to happen. 

The day after my arrival I had six hours of meetings with our supplier.  The bleeding began before our morning coffee break.  I didn’t say anything, I simply excused myself to the bathroom.  I held it together, but I have no idea if I appeared normal to the team.  I’d bet I did.  I have a remarkable ability to compartmentalize. 

I remember one time finding an enormous cockroach on the wall of my hotel room.  We were about to check out, and my husband had already left to go downstairs and pay our bill.  I hate cockroaches, and I’m certain that had he been in the room, I’d have screamed and made him deal with it.  Instead, I calmly covered it with a glass and walked away.   That night in my hotel I reread The Untethered Soul.  Then I wandered alone through the December Christmas markets in Germany.  I drank spiked hot chocolate, bought boxes of marzipan, and fingered handicrafts.  I didn’t cry.  It was like the cockroach; no one was there to comfort me anyway. 

My husband and I recently listened to Malcom Gladwell’s book, Talking to Strangers.  Gladwell would characterize me as a person who is ‘mismatched’ because my outward appearance belies my inner feelings.  I am an example of why we never truly know what’s going on inside the head of people sitting across the table from us.

The next day was Saturday, and I flew to the UK for another supplier meeting the following Monday. Luckily, one of my childhood friends lived in Cambridge and I spent the weekend with her drinking wine and catching up.  Her company buffered me across the waves of grief, and again, I refused to collapse.  I was engaged and present, if a little emotionally distant. 

Then, the night before my trip home, my sister informed me that my brother-in-law needed emergency surgery.  I shifted into help mode.  Rather than returning to Seattle, I went to Chicago to sit for my niece and nephew.  I am ashamed to admit that while his situation was scary, I provided me relief.  I was grateful to have “acceptable” justification to change my flights and take time off work.  Surgery.  Emergency. Family.  It now strikes now me how ridiculous it was to think I didn’t have this already.

My brother-in-law’s illness also provided me a reason to push aside my grief in support of someone else.  Because I didn’t want to grieve our 4th miscarriage.  I didn’t want to admit that I had a 4th miscarriage.  So, I deflected. I redirected. I avoided.  But like phantom limb syndrome, just because I cut it off, didn’t mean I couldn’t still feel it there, aching.   

I don’t like sitting in in uncomfortable feelings.  I don’t like talking about them either.  I don’t think anyone does.  But we have to find ways to process or the feelings fester.  A lot of what I’ve worked on with my therapist over the years are ways to process grief nonverbally, through journaling, art, visualization, or movement.  Because grief can’t be rationalized.  You can’t talk your way into feeling better.

The Christmas after our fourth miscarriage, my husband and I spent alone in Seattle.  This Christmas will be the same. I feel similarly sad and lonely, although for different reasons. But I am better at recognizing my emotions now, instead of ignoring them. I know I am grieving distance from family, a gap in traditions, and missed memories.  Talking about it doesn’t help, because we all feel this way.  So, I am trying to process other ways.  I am making a concerted effort to create, through art, decorations, crafts, and cooking.  I am using what energy I have to connect, through Zoom, and FaceTime, and phone calls.  And I am giving myself the grace to sit quietly with my coffee, hang out in my low energy, and eat all the holiday sweets I desire.  If I have learned anything, it is that time heals (most things).  The challenges of 2020 will fade.  We will recover.  Of this I am sure.  Happy holidays. 

Time Keeps on Slipping, Slipping, Slipping

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This is actually one of the first ‘comics’ I drew when I decided to start blogging, but up until now, I haven’t been able to find the right words for it.  Or maybe I always had the right words.  They are just angry words, so I didn’t want to share them.  But after reading my recent newsletter from Andrea Syrtash, Founder of Pregnantish, I decided it was time.  

In her letter, Andrea mentions an AirBnB owner, who after hearing what she (Andrea) did for work, remarked that she (the owner) knows so many women having issues with pregnancy and wished that they took better care of their bodies and/or didn’t wait until 48 years old to start trying.  [Loaded sigh.]

Unfortunately, this is a common characterization of the infertility/miscarriage community – older, stressed-out women who waited too long to have kids and are now turning to science to solve their problem.  Sad, but it is their fault. 

We all face this.  About six months ago, I was telling one of my former business school professors about Recurrent Pregnancy Loss Association and the importance of research into miscarriage and infertility because there is so much still unknown and unexplained.   He nodded along, then said it was “unfortunate” how many more people were dealing with infertility these days and posited that perhaps one of the reasons was because women are waiting to have their children until later in life.  This was a smart man.  An educated man.  But a man completely ignorant to the realities of infertility. 

It is true that rates of infertility and miscarriage are correlated with age.  But it is not true that infertility rates themselves are increasing.  A CDC National Health Statistics Report showed that the rate of “impaired fecundity” (difficulties getting pregnant or carrying a pregnancy to term) has remained nearly constant since 2002.  But even if this were not the case, I desperately want to tell this man the following:

  1. Infertility is a multi-factorial, medical condition, please stop assuming age is the cause of our problems.  Many of us started trying for a family at a much younger age than we are now and have been on our fertility journey for a long time.
  2. Male factor infertility is a cause for about a third of couples suffering from infertility, and multiple studies show that sperm count and quality decline with age, so don’t assume the problem is women waiting longer to have children.
  3. Some of us didn’t meet our partner until later in life and weren’t inclined to start trying to conceive before then, so don’t assume we waited because we wanted to.
  4. Some of us did make a deliberate decision to wait until we were older to start building a family, perhaps even knowing there were increased risks, but that doesn’t mean that our frustration, grief, or losses aren’t worthy of attention and compassion.

I am not ignorant of the science.  I understand that statistics are not in our favor.  Numerous medical articles detail the risk of aneuploid embryos (embryos with an abnormal number of chromosomes) by maternal age.  The risk sits around 30% for women under 35, jumps to 60% by age 40, and +85% by age 45.  A woman’s chances of naturally conceiving a chromosomally normal embryo are literally time stamped.  But the belief that infertility or miscarriage is simply a function of age serves to stigmatize and minimize a very real health problem.

A similarly triggering phrase for the trying to conceive community (TTC) is “just relax.”  All of us – and I mean ALL of us – have had someone tell us the story of their friend’s sister’s cousin who tried for years and then magically got pregnant once she quit trying and calmed down.  “It’ll happen when you least expect it, if you’d only just try and relax.” Barf.   

The LAST thing I wanted to hear when I was trying to get pregnant or stay pregnant, when I was feeling broken and traumatized, when I was hopped up on all manner of hormonal cocktails, when I was anxious and uncertain if I would ever be a mother was to relax.

I faced an impossible conundrum.  Yes, of course I wanted to take a break from trying again after every miscarriage, but I also felt a terrible urgency to start up again as quickly as possible lest my chances slip away from me entirely.  I felt older and less capable of success by the month.  So, when an uninformed advice-giver then assumed that my family building struggles are my fault, because I was just stressing about it too much, I kind of wanted to punch them in the nose.  

There are mountains of evidence to show that infertility and miscarriage cause stress, anxiety, and depression.  In fact, a literature review cited in a 2018 article in Dialogues in Clinical Neuroscience showed that 25-60% of infertile individuals experience anxious and depressed psychological symptoms. What is NOT proved is that stress, anxiety, and depression cause infertility and miscarriage.  Certainly, we are all healthier and better able to cope when we manage our mental health.  But this isn’t the cause of our medical, fertility related problems.  Would you tell a cancer patient to “just relax” or that their tumor will go away when they least expect it if only they stopped fighting so hard?  Of course not.  Cancer is disease that needs to be treated medically.  Guess what?  So is infertility.

Next time someone tells you about their struggle to build a family, rather than trying to identify or solve their problem simply try saying this:  “I’m sorry that you have been dealing with that, but I want to thank you for sharing your story with me.  It’s so important for people to talk about the challenges of infertility and miscarriage.  Please let me know what I can do to support you through this process.” 

Dear Lena

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Lena Dunham recently came out publicly with her personal story of endometriosis and resulting inability to bear children.  Her memoir “False Labor” is the cover story for the December issue of Harper’s Magazine.  A friend of mine shared a link to the article, but I admit I didn’t read it until I began to see the slews of critical, sometimes compassionate, and often angry reactions from the online infertility community. This post is an effort to explore that. 

Lena’s story is not encouraging.  Perhaps that’s why I didn’t mind it.  My own path to parenthood has been dark.  I avoided addiction, and I faced different diagnoses than she did, but I was also never able to approach it with the optimism that so many women in the online infertility community seemingly shared. 

In her story I read much of my own.  A socialization that taught me I could have anything I wanted if I only tried hard enough.  A belligerent belief that having children was my gender-given right – that it should be easy.  The questioning of my purpose as woman – as a human – in contemplating a potential life without children.  The harsh examination of my own privilege of access to care within (to use Lena’s words) the “fertility-industrial complex.” The despair and exhausted relief at coming to the end of the road. 

In fairness, parts of her article are unkind to the #IVFWarriors, the #miscarriagemamas and many of the other hashtag groups who have carved out a place for themselves on social platforms.  By her account we are a largely privileged, often delusional group of type-A, go-getters willing to do anything to have a baby.  But Lena’s critiques dripped with bitterness.  Her words were cynical.  Her grief evident.  I read her judgements as an attempt to deflect shame away from herself and onto others. 

Infertility and miscarriage are deeply isolating.  The online community creates a space for us when our in-person friends can’t understand us or tire of trying to.  It is not perfect.  It is not for every person or every part of the journey.  It is flawed as we are flawed.  But it is there to engage with or not.  It seems to me that Lena found a place online where she thought she fit, only to feel all alone again.  The subset of an already isolated group.  So, she lashed out.  Was it fair? No. Was it human? Yes.

The online infertility community is littered with positive messages.  Words of reassurance.  Offers of support.  Reminders that we are not alone.  Motivation to carry on.  Some women depend on this encouragement.  I spoke to one woman who told me that when she was going through infertility, she devoured other women’s stories because they gave her hope.

But different people need different messages.  In contrast, other women’s stories made me either jealous or sad, sometimes both.  I couldn’t read them without comparing myself, and I usually felt worse for the comparison.  It felt like I was on an impossible path, so their successes made my efforts feel even more futile.  When I was down on the mat, I wanted someone to say, “You can get up if you want, but it’s also ok to just lie here.” 

When you want to stay down, hearing “You can do it!” only serves to make you feel more like a failure.  I was ashamed to stop trying and it took me a long time to be ok with the decision.  I don’t think Lena’s fully ok with it.  But she didn’t really choose it.  The realities of her body forced the decision upon her. 

There aren’t as many online voices singing the virtues of “giving up” or “giving in.”  Maybe there aren’t as many because the effort of trying does pay off for lots of women.  But maybe there aren’t as many because we don’t always want to celebrate the women who wind up childless not by choice.  We don’t want to consider that they might be us.  More than anything, I think this is what her article tries to normalize.

I can paint my own story with different brushes.  I can use it to elicit guilt, or jealousy, or even gratitude.  I can step back into memories and let the pain wash over me in waves.  I can examine the experience in aggregate and applaud myself for strength and determination.  I can release all my desires and expectations and give them up to God.

I can do all this because it is actually all the above.  Cynicism, positivity, even faith are only tools we use to manage an absolute lack of control.  When we cling too tightly to one approach, it can make us unaccepting of others.  If our approach fails, we may become angry or defensive.  The way lies somewhere in the middle.  For me, there is always a bit of hope laced with my cynicism, a touch of doubt at the edges of my faith, an ocean of sad beneath the positivity. 

Lena gave an interview with People Magazine about her memoir.  Weirdly, I found it better expressed her point of view than her writing, so I’ll end with an excerpt from that interview which I think is a beautiful and succinct summation of the infertility journey:

“Infertility has a ripple effect — it’s not just about not being able to have a child, it’s about not feeling you understand your place and job in this world. Not understanding what your body was meant to do and not understanding what your role is as a woman, and I think it brings up that sense of feeling like you’ve lost your sense of your own role in the universe. There’s a great gust of depression that comes with that… I had to really untangle all of that to realize that I was still going to become a mother, but I was going to do it on my own terms.”

My Rearview Mirror

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The Indian spiritual leader Sri Chinmoy said that “surrender is a journey from outer turmoil to inner peace.”  Lately, I’ve been in a bit of turmoil.

Over the summer I had another surgery to deal with my misbehaving uterus. 

After my sixth miscarriage, my period never returned, which is not normal.  I knew it was not normal, but I still I waited 6 months before telling my doctor, because I was exhausted from being a patient and I just didn’t want to deal with it. 

Six more months, many blood tests, and several diagnostic exams later it was determined that I had uterine adhesions (or scarring) blocking all flow out of my cervix.  This is called “Asherman’s syndrome” and it had likely resulted from my D&C.  The diagnosis felt oddly appropriate.  My losses scarred my spirit, why not my body too?  It felt like my uterus was doing a mic drop.  “It’s been fun, but we’re out.” 

I seriously considered not fixing it.  I think a small part of me thought the permanent eviction of Aunt Flo was my reward for enduring all the pregnancy losses. But in the end, my stronger desire was to return to a time when my reproductive health wasn’t a constant problem and the only conversation I had about my uterus was during my annual well-woman exam.  

And now, after the surgery, I am “happy” to report that my body is back in business.  Unfortunately, my reinstated cycle has allowed my mind to become newly susceptible to old questions, like, should my husband and I try again? 

Without my period, it was a non-issue.  We were done trying.  We were moving on.  With my period, like a moth to a flame, I am drawn again to the narratives of other women and the allure of diagnostic tests and treatment protocols we never tried.  Once again, I’m losing hours speculating whether a pregnancy outcome might be different now that I’ve worked through my grief and am less stressed.  Once more, I’m approaching my birthday aware of my ticking fertility clock and wondering whether I should give it one last shot. 

My sister asked why I persist in putting myself through these mental gymnastics, but I had no explanation for her.  It doesn’t make sense even to me.  We’ve made the decision to pursue surrogacy.  I know that not trying is better for both my mental health and the state of my marriage.  It’s not even that I want so badly to be pregnant.  It’s more that I can’t let go of the belief that my body should be able to be pregnant.  I’m still stubbornly trying to put the puzzle together.  And because of that, I can’t seem to get my head out of the rearview mirror. 

I called my fertility doctor to ask if there was anything we might try differently if we want to conceive again.  But having already exhausted most available medical interventions, she had little more to offer.   

I think that’s why I can’t stop worrying.  It is terribly uncomfortable to sit in a place of unknowing and not-doing; my brain resists and resents the lack of control.  I recently watched The Last Dance on Netflix.  In it, Michael Jordan said he can’t stop wondering what might have happened if they’d had another season.  And although my context is completely different, I understood his sentiment.  How do you walk away from the game when there might still be cards to play or moves to make?  How do you quiet the what ifs and remain confident in the path you’ve chosen?  It feels like my brain is on a mental stability ball, constantly trying to reposition itself to stay centered and not lose its balance.  

I’m currently reading Admiral William H. McRaven’s book Make Your Bed.  In one chapter he explained that during SEAL training, the instructors would sometimes order recruits to turn themselves into “sugar cookies.”  When this happened trainees would have to jump in the ocean and then roll around on the beach to coat themselves in sand.  Becoming a “sugar cookie” was arbitrary.  He couldn’t prevent it, nor did he find it productive ponder why he became a sugar cookie.  The only thing he could do was get comfortable with the sand and keep moving forward. 

I find this story helpful, because at the end of the day, it doesn’t matter why I can’t stay pregnant.  What matters is how I move forward.  My sister said life has a way of teaching us to submit to our lack of control, and if we fail to learn the lesson the first time, we eventually get another opportunity.  Well, I’ve had six opportunities, but I’m still learning.  I’m trying.  I’m trying to surrender to my reality rather than fixating on the past or obsessing over the possibilities.  I’m trying to breathe deep and give myself a break.  I walk my dog.  I pet my cat.  I hug my husband.  I call my friends.  Maybe one day I’ll even find the way to inner peace.

Fruitful Fertility Post

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Today is Pregnancy and Infant Loss Remembrance Day. A day to remember all the children who ‘might have been’ and honor the pain of the mothers and fathers who lost dreams.

I had the honor and opportunity to share my story with Fruitful Fertility in order to help raise awareness about recurrent pregnancy loss. Fruitful Fertility is a 1:1 mentoring service for women dealing with infertility. They match women with mentors who’ve had similar experiences. The post below was originally published on their blog.

If, after reading this, you’d like to show your support to women and families who have lost pregnancies, my organization (RPLA) has created four different “selfie signs” for people to post on social media. They can be found here: www.rplassociation.org/connect. Please tag @rplassociation in your post.

“Sometimes I forget that I have been pregnant.  I think about my fertility experience in terms of my losses, not my pregnancies.  But I have been pregnant for a combined total of 45 weeks – that’s more than full term.  I’ve had nausea and night-sweats and sore boobs and exhaustion.  I’ve seen two heartbeats.  I have been pregnant.  Six times.  But I’ve never made it through a first trimester. 

For a time, the process of trying to get and stay pregnant stole my identity.  It affected my job performance and impacted my personal relationships.  It invaded my body and my mind.  It was a single note played so loudly and consistently that it muted all the other chords of my life.

My memory too, is littered with otherwise wonderful events remembered through the lens of my losses.  The moments themselves weren’t bad; I was with friends, or family, or on vacation, or at fun events.  But it’s as if there’s a scratch on the lens blocking certain shapes and distorting certain angles.  They are all slightly marred. 

It has been 18 months since my last miscarriage, and while the pain is not fresh, there are plenty of days I still grieve.  Anniversaries of losses can be hard, so can intended due dates, so can places or activities associated with the losses.  Mothers’ Day can be particularly challenging.  Receiving birth announcements and baby shower invitations can trigger sadness.  These are normal feelings, yet I suffer most of them in solitude and silence.  That’s why I appreciate the many stories shared during October Infant and Pregnancy Loss Awareness Month; they remind me that I’m not alone.  

My experience, the repeated cycle of conceiving and losing pregnancies, is called “recurrent pregnancy loss.”  It is a condition that impacts 1-2% of couples (10-15% of the infertility community), and while there is much known about it, still roughly half the cases remain medically “unexplained.”

I am one of these women.  The unlucky amongst the unlucky.  I don’t know why I can’t carry a pregnancy to term.  I’m not sure I will ever know. 

It has taken me a long time to accept this truth.  For years, I was desperate for a reason.  I wanted a game plan – something I could do differently in future to ensure a different outcome, because lacking a medical explanation for my losses, I often blamed myself. 

After every pregnancy I meticulously retraced my actions, mentally flogging myself for misbehaviors: I should have ordered decaf; I shouldn’t have taken that hike; I should have switched to glass water bottles instead of plastic.  I felt responsible for the outcome of my pregnancies.  Childbearing was something my body was built to do, and my inability to procreate made me feel like something essential was amiss.  I felt broken and I felt culpable. 

Time, intense therapy, and the knowledge that I tried everything helped lessen my guilt.  On my journey to motherhood, I saw multiple reproductive specialists, had several surgeries, took hormones, steroids, blood thinners, vitamins, and supplements.  I prescreened embryos and did two rounds of IVF.  I tried acupuncture and experimental medications.  I scoured the internet for information about healthy pregnancies and modified my diet and lifestyle accordingly – intermittently cutting out dairy, gluten, coffee, and sugar.  I did yoga and tried meditation.  I prayed desperately.  But nothing worked.  At this point, even my doctor supports me pursuing alternative paths to parenthood.   

I have the utmost respect for every healthcare professional I’ve seen these past years.  They have been intelligent and compassionate and have employed every tool at their disposal to try and keep me pregnant, but medicine has no more answers for me.  The facts are that:

∙       30% of infertility cases are unexplained

∙       50% of recurrent pregnancy loss cases are unexplained

∙       60% of stillbirths are unexplained

This is why my husband and I decided to start Recurrent Pregnancy Loss Association (RPLA) – a nonprofit organization dedicated to funding research into the causes of and treatments for recurrent miscarriage.

This year, more than ever, we have witnessed how quickly the scientific and medical communities can become galvanized to find solutions to challenging health problems.  It’s not a question of capability, it’s an issue of funding and focus.  Through RPLA our hope is that by convening the patient and scientific communities we can help other couples accelerate their journey to parenthood.  My husband and I may not get the answers we hope for, but perhaps we can prevent others from walking this path behind us. 

So this October, if you’re ready, if you’re able, in addition to celebrating stories of strength and healing, in addition to remembering our losses and honoring our pain, let’s also come together with the purpose to find solutions and advocate for answers.”

I’m Sorry, But I Can’t Be There For You Right Now

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October is Pregnancy and Infant Loss Awareness Month.  This means there are a lot of pregnancy loss facts circling the internet and a lot of women sharing personal stories of miscarriage and stillbirth on social media.  The stories are often heartbreaking. But the sharing of them is wonderful.  As more women talk about their experience, the stigma around miscarriage lessens. As the general public becomes more aware of the burden of pregnancy loss, better support systems can be put in place for families.  I am inspired by and grateful for every person who is engaging in the conversation this month.  And sometimes it is also too much for me. 

I consider myself to be in a stable phase of my fertility journey.  I am not actively trying to get pregnant, which has removed some of the psychological pressure I was putting on myself and reduced my emotional frenzy.  I have been seeing a therapist for almost two years to work through my shame and grief.  As a result, I have created enough space to allow me to hear other people’s pain with compassion, and participate in infertility and miscarriage communities and conversations.  That’s why I started this blog; I was finally ready and able to participate. 

There is a HUGE community of infertility and miscarriage bloggers.  There are more than a few published memoirs on infertility and pregnancy loss, and a growing number of podcasts.  There are whole companies dedicated to supporting women trying to build their families.  But for the first four years of my fertility journey, I didn’t know any of it existed, and I didn’t want to. I don’t think I would have even read my own blog four years ago.  A woman who had lost six pregnancies and still had no baby, who talked at length about disappointment and grief… it would have been too overwhelming. 

It is incredible and brave when women share their story.  We should celebrate those women. But it is equally important to recognize the women who don’t share because it is either too hard or their pain is too fresh.

John Legend and Chrissy Teigen shared some of their most vulnerable moments with the world last week.  It was devastating and powerful; and some women couldn’t hear it, or care.  Not because they don’t think it’s sad, but because it requires all their energy to care for themselves.  Sometimes you only have the strength to carry your own experience.  Sometimes you have nothing left to hold other people’s emotions.  And that’s ok. We are all in different places and phases.

I recently read a story of a women who had 13 miscarriages; and then she had a baby.  Reading this brought up several distinct thoughts for me: (1) Joy. Yay, good for her! (2) Jealousy. Dammit, why did it work out for her but not me?!  (3) Befuddlement. How had she endured 13 losses? I was emotionally shattered from six. (4) Self-doubt. Was I just weak? Should have tried harder? 

Even after my self-work and supposed emotional “stability,” rather than be inspired by her story, I was hopeless, self-critical, jealous, and defensive.   I would love to get to a point where I can hear stories like this without such messy feelings, but it will take more time and work.  I am still healing. 

Some women derive strength from miscarriage and infertility stories.  Engaging with others gives them hope, normalizes their feelings, and makes them feel less alone.  But there also women like me who – while wanting all those things – can’t always safely let others into that tender place. 

Hearing other people’s stories about infant and pregnancy loss can be triggering.  It’s ok.  You don’t have to engage – with either your pregnant friends, or your bereaved ones.  You are allowed to take the time and space you need to heal.  It doesn’t mean you don’t understand that other women are hurting.  It doesn’t mean you lack perspective, are weak minded, or cold hearted.  It just means healing is hard. October is still for you.  I’m sorry for your loss and pray you will find support and peace as and how you need it.

PCOS Awareness Month

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September is PCOS Awareness Month, so I want to take the opportunity to do a little PCOS PSA.  (Although, I’ve never approached a post in this way before, so feel free to let me know if it’s useful.)

PCOS stands for “polycystic ovary syndrome” or “polycystic ovarian syndrome.”  It is: a common health problem caused by an imbalance of reproductive hormones. The hormonal imbalance creates problems in the ovaries. With PCOS, the egg may not develop as it should or it may not be released during ovulation as it should be.(www.womenshealth.gov)

PCOS impacts 1 in 10 women and is the leading cause of infertility.

Understanding and awareness of PCOS has increased dramatically in recent years, and the PCOS Challenge, an international nonprofit, has done a great job educating women about the disease and advocating for support and research.

This is important because I think historically doctors had a very specific idea of how a PCOS patient would present.  In fact, when I was first told I might have PCOS, I distinctly remember one doctor/friend (luckily a non-ob/gyn), telling me that I couldn’t have PCOS because I wasn’t overweight and didn’t have a beard.

There are several things upsetting about this comment, not the least of which is that I am actually incredibly sensitive about my level of facial hair!  More importantly, it paints a very narrow picture of PCOS, when in actuality the syndrome can manifest quite differently from woman to woman.  The name itself is even somewhat misleading because not every woman with PCOS will have polycystic ovaries.  Instead, there are a number of PCOS symptoms any one of which may or may not be expressed in a PCOS patient.  This is why many women with PCOS are improperly diagnosed or undiagnosed (according to PCOS Challenge).  

The first time a doctor suggested I might have PCOS was in 2012 when I didn’t get my period for 6 months after going off birth control.  I don’t even think she ran blood tests, she just said PCOS was something we “may want to investigate” if my cycle didn’t return.  Of course, this passing remark sent me down the internet rabbit hole.  Dr. Google convinced me I did indeed have PCOS, and a plethora of online gurus promised to cure me if I would only cut EVERYTHING out of my diet, exercise daily, and learn to be more mindful.  (Please note my heavy cynicism here…)

That said, paranoid about insulin resistance (commonly associated with PCOS) and the risk of diabetes, I did start jogging more often and became slightly more conscious about my diet.  Smart moves regardless of whether I had PCOS.  And related or not, my periods did return to a regular – if slightly extended – cycle.  I didn’t think any more about it until I went through my first infertility work up. 

During an ultrasound, my care team noted the characteristic “string of pearls” around my ovaries indicating that multiple follicles were developing at the same time (another common characteristic of PCOS).  But while I had polycystic appearing ovaries, my hormone levels were within range, so I did not meet the strict clinical criteria for a definitive diagnosis.  I was also not obviously insulin resistant.  My blood sugar was normal, albeit on the upper end of the normal range. 

Still I was given metformin (a drug that helps control blood sugar), told to limit my carbs, and try to lose 5% of my body weight.  It was one of many times when diagnostics revealed nothing conclusive, but I was treated anyway… just in case… just because we all wanted to feel like we were doing something. 

As it turned out, PCOS was not the villain in my fertility story. While PCOS is known to be related to infertility, its link to miscarriage is still medically debatable.  However, it may still have a role to play in my long-term health.  Here are some scary facts (source):

  • Women with PCOS constitute the largest group of women at risk for developing cardiovascular disease and type 2 diabetes.
  • Some studies have shown women with PCOS to be at three times higher risk for endometrial cancer and may also be at increased risk for ovarian and breast cancer.
  • Some studies have shown due to symptoms of anxiety and depression, suicide attempts are up to seven times more common in women with PCOS than other women.

If you think you may have PCOS, please talk to your doctor.

If you are looking for supportive resources, here are a few I’ve found.  This is certainly not exhaustive.

  • PCOS Challenge a non-profit advocacy and patient support organization
  • “PCOS for Dummies” (link) good for the basics
  • “PCOS Diet for the Newly Diagnosed” (link) I have enjoyed many of recipes in this book, so much so that it survived my “tidying up” purge
  • “8 Steps to Reverse Your PCOS” (link) I liked how this book was structured, and the detail it went into around tests and results, but it definitely takes a naturopathic and integrated medicine approach which you should be aware of before reading

There is a booming online community of women with PCOS. If you have this diagnosis, please know that you are not alone. It can feel frightening and demoralizing to learn you have a chronic health condition that must be managed. But there are people and resources that can help, and we each have strength more than we know. And after all, RBG said, “So often in life, things that you regard as an impediment turn out to be great, good fortune.”

All the good things and the bad things that may be…

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It is impossible to fully address the topic of infertility without talking about sex.  But if I have sometimes been ashamed to discuss my fertility challenges, I have been absolutely loath to bring up its impact on my sex life.  Sharing this aspect of myself feels like inviting spectators into my bedroom to examine the sheets.  Yet it cannot be ignored.  Miscarriage and infertility had a material impact on my sex life. I don’t believe I’m unique in this experience, and I also believe that one of the most effective ways to heal from it is to talk about it.  So, here we go, let’s talk about sex.

There are many reasons to engage in sex.  Some people chase pleasure, some like to experiment, others seek out fantasy – a way to escape themselves.  Mostly, I crave closeness.  I’m a hopeless romantic.  It’s why I read poetry, watch sappy movies, and listen to love songs.  I want the butterflies.  I pursue passion.

I remember the exact moment I realized I was in love with my husband.  I was on the Bryan Center walkway on Duke’s campus headed back to my dorm room when the feeling washed over me – a spark started in my heart and sent tingling waves of emotion through my nervous system and I knew. 

Falling in love was easy when I was 19.  Peering over the precipice of adulthood, I knew it was not a trip I wanted to take alone.  Every conversation and every interaction I had with my husband felt vital to my future.  Intimacy was as essential as breathing.  I wanted to blend into him until we were of one mind and one body, or as Kahlil Gibran says, “to melt and be like a running brook that sings its melody to the night.” 

With time and maturity I disentangled from him and became my own individual within our relationship, and the focus of sex changed from conjoinment to connection.  That’s why it felt exciting and appropriate to embark on a journey of family planning.  It gave our love a purpose – the opportunity to create something.  And when we got pregnant, I felt like our love transmuted into something sacred inside of me.  That is, until my body betrayed me.

Miscarriage was traumatizing.  There was the physical pain – obviously – but there was also the psychological feeling that my body had been violated and that I was no longer in control of my person.  The resulting impact on my relationship was significant.  Good sex and true intimacy require vulnerability.  In order to give your body to another person, you must first let go of it yourself.  Yet after my losses, I was unable to do so.  Love and desire felt unsafe; instead of creating life, they’d invited death.  I was afraid that sex could only ever bring me to a place of sadness and pain. Compounded on that, there was one year in the middle of our losses when we couldn’t get pregnant at all.  Twelve months of trying and tracking and testing; and every month the waiting, the hoping, and ultimately, the disappointment. 

Miscarriage was hard on our marriage because we didn’t know how to talk about it, and we pulled away from each other instead of grieving together.  But our year of failed conception was something different entirely.  Disappointment dominated rather than feelings of sadness.  Sadness was exhausting and overpowering; but it was accessible.  Sadness could invite others to hold it.  Disappointment was harder to share; it was personal and bitter and brutal. 

Overt time, fear and failure defiled my sexuality.  Sex went from being an act of intimacy to a dreaded chore.  “Planned intercourse” around my ovulation felt prescribed and transactional instead of spontaneous and special – even the term was emotionless and clinical.  What should have been languorous and fun became efficient and goal oriented.  My husband struggled to understand how I could suddenly perform when I was ovulating, but otherwise needed to be in the mood. I struggled to comprehend why he could be in the mood anytime except when there was pressure on him to perform.  Many fights ensued.  Multiple nights were spent crying in separate rooms.  Then, of course, we moved on to IVF and no longer needed to have sex at all in order to get pregnant…

This was not how I had pictured my life or my relationship. We loved each other very much, but I think it’s important to admit that staying married was not a foregone conclusion. Infertility can break a relationship. A dysfunctional sex life can shatter intimacy. Some couples don’t survive this. My husband and I have been married for 11 years.  For half of those we’ve been trying to start a family.  Concerted effort and couples therapy enabled us to pull our sex life back from the brink and unshackle it from the weight of procreation, but we are still working to find the way back to one another.

There are moments when I feel hopeless in our efforts; times when I yearn to recover the innocence and abandon I felt when I was 19, though I know it is impossible. But in these moments, I’m reminded of one of the bible passages sung at our wedding: Song of Solomon chapter 8 verse 6, “Many waters cannot quench love, neither can floods drown it. For love is as strong as death.”  

Infertility and miscarriage washed over us like a flood, breaking our levees and soaking us in sorrow. But our love hasn’t been drown; so we rebuild. Brick by brick we are reconstructing our palace of emotional and physical connectedness.  Although our relationship has changed, once again “we’ll celebrate, we’ll sing, we’ll make great music.” (Song of Solomon 1:4)

Fertility is a (half)Marathon

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When I’m being melodramatic, I like to say that my sister saved my life.  In actuality, I think she saved my sanity.  I’m quite certain I would have gone into a deep depression after my second miscarriage had it not been for my sister. 

My second loss was a psychological turning point for me.  My first loss, while devastating, was possible to rationalize.  It was common, a likely genetic aberration, no cause for concern.  The second loss, however, seemed ominous.  Our experience no longer felt ordinary.  It felt wrong.  

My sister was living in LA at the time with her husband and my nephew, who had just turned one.  We were in Chicago.  Wisely, in October, about a month after the loss, my husband forced me cross-country for a weekend of emotional fortification, family and fall festivities. 

We did, in fact, carve pumpkins – really awesome ones that were shaped and painted to look like Elmo and Cookie Monster.  I believe they melted in the LA heat long before Halloween.  More importantly, the visit launched me into a physical and mental endeavor that ferried me through my pain. 

In an effort to lose her baby weight, my sister had decided to train for a half marathon.  During my visit, she dragged me along on one of her training runs.  It was only three miles, but I barely made it.  I remember being an entire block behind as she finished the run, yet she patiently waited for me as I hobbled the last length.  I was impressed, inspired and just low enough to allow her to convince me I should train with her for the full race. 

Let me be very, very clear that I am NOT a runner and never imagined I would run 13.1 miles.  At the start, I’m not even sure I believed I would make it to the end. The longest I’d ever run up until that point was a 10k Turkey Trot, and I distinctly remember hearing a spectator say, “oh, this must be the walking group” as I jogged slowly by.   But somewhere in the middle of the training, the race shifted from something I was doing solely to support my sister to a goal I HAD to achieve at a point in my life when I really needed a win. 

I know some of my readers are runners, and to you it may seem like I’m overhyping the experience, but for me the struggle was real.  We all have something (or many things) in life we wish we could achieve but believe we’re incapable of.  Our “big goal.”  Our albatross.  We want to run a marathon (or an iron man), write a novel, own a home, find true love, start a business, or… grow a family. 

My miscarriages made me feel like a failure.  I felt impatient for a family and completely out of control.  But running 13.1 miles was a goal big enough to counterbalance the weight of my grief.  It gave me back a sense of accomplishment and reminded me I had unknown strengths and faculties.

The training hurt my body.  I honestly almost ran in a shirt that read “everything hurts and I’m dying” because that’s how I felt a lot.  But the lesson I learned was that big achievements don’t come easy and that I shouldn’t expect them to.  Accomplishing something big takes time.  I am not a patient person.  Like Veruca Salt, I want everything now.  But that is not the way running works.  It is slow progress.   I have such an appreciation for the time it took to train, because it made me recognize that I can do big things, they just won’t happen all at once.  The important thing is to keep moving forward and making incremental progress – one foot in front of the other.

For months, my sister and I trained alone together from separate parts of the country.  We mapped our runs and shared our routes.  We encouraged one another and held each other accountable, and in February of 2016 we finished the race.  I was overwhelmingly proud of myself.  I finally understood that “a done something is better than a perfect nothing.”  Up until then, I had often let fear of failure or judgement stop me from doing things.  My perfectionism was debilitating and often lead to shame and unnecessary guilt.  But I never expected to break any records with the half-marathon.  I wasn’t trying to be perfect; I was just trying to finish.  Sometimes, the bravest and most perfect thing we can do is to begin and then begin again.   

My fertility journey reminds me a lot of my training for the half marathon.  It has been an imperfect mess.  It has been physically and emotionally taxing.  It has required commitment and perseverance.  It has seemed never ending.  But the goal is clear, and in the end, all I can do is run my own race. 

Et tu, Brute?

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Hello again.  It’s been several weeks since I posted.  There are some very simple explanations for this, as well as reasons which are harder to articulate. 

My July was spent with family.  First in Chicago, visiting my mom, my sister, my niece and nephews, both my grandparents, and some extended family; then driving cross-country to Seattle with my dad.  In our current socio-political environment personal travel is viewed with a lot of judgement.  While I definitely fall into a less rigid segment of quarantiners, it was a tough decision choosing to go home.  I wondered constantly if I was being irresponsible or putting lives and loved ones at risk.  In the end, my family agreed to let our love trump our fear.  So, after months of nothing but pictures, phone calls, and FaceTime, I finally got to give hugs, share meals, and spend time with those people who fill up my soul and remind me who I am and where I come from. 

I celebrated my nephew’s 6th birthday, painted his face to look like a fox, and shared his cake, littered with fun-fetti and complete with blue icing.  I sat with my mom on the first anniversary of my Grammie’s passing.  I read the Sunday lesson with my Papa and ate dinner with my Nana.  I comforted my dad after he put his cat to sleep and stayed up until the wee hours of the morning talking with my sister.  I was THERE. I was PRESENT.  I was HOME.

A lot of people live near their loved ones and have been able to do this all along despite the pandemic.  I don’t, and it has unquestionably affected my mental health.  My family feeds my spirit in a way that no one else can.  When I am with my niece and nephews, I feel grounded in the current moment and can think of nothing else.  When I spend time with my sister, I feel seen in a way that even my husband cannot achieve.  My mom gives the best hugs in the world – I could live inside her hugs.  My dad and I share such similar energy and dispositions that we could as easily talk for hours as sit in comfortable silence.  There were moments at home when I felt so overcome with emotion, I thought I might burst, as if the love I felt was too much for my body to hold inside.  And leaving broke my heart.  I will not endure 6 months away again. 

The night before my departure, as I was putting my oldest nephew to sleep, he asked why he gets to see his grandparents so frequently, but not me.  I explained that his grandparents live close by, while I live far away and have to take a plane to see him.  I said because of Covid, people have not been able to take planes as frequently as the they used to.  Then he told me a week of visiting was not long enough, and we both cried, and I was filled with rage and frustration at this virus for its continued disruption of my life, as well as a deep, deep sadness for everything it has taken from me.

My trip home is the simple explanation for why I haven’t posted.  I simply didn’t want to take time away from my family to write.  Here’s the more difficult one: this week was supposed to be the embryo transfer into our surrogate, or gestational carrier (GC).  But like so many of my family building plans, things have not proceeded according to schedule.   For health reasons of her own, last week our GC had to pull out of the agreement.  The only good news is that the embryo itself had not been thawed and remains safe and frozen here in Seattle.

So much of what I’ve blogged about until this point is in the past, so I’ve had time to process my feelings.  I’ve been able to look at my reactions with distance and compassion and find words or metaphors to describe the experiences.  But my surrogacy journey is happening now.  My mind is occupied with it, and it’s not always easy to determine how I feel about it.  Excited and hopeful?  Yes.  But also detached and cautious.   And now, sad, and disappointed.

With recurrent miscarriage, you learn to mistrust hope and temper excitement.  There are many steps between deciding to use a gestational carrier and an eventual delivery, so I’d been careful not to let my enthusiasm go too far.  I didn’t want to be disappointed again.  However, my attempts at emotional preservation were completely futile.  Despite my better judgement, I was getting excited.  Surrogacy didn’t rely on my misbehaving uterus – already the odds seemed in my favor.  So, in equal parts pragmatism and optimism, I drove a car full of hand-me-down baby supplies back from Chicago with my dad.  I talked openly and freely about the surrogacy process, our GC, and our transfer.  I even pre-wrote a blog post about the transfer (this one, which I obviously edited…) As hard as it was to engage in a process which I’m inherently separate from, I was hopeful it would all work out. 

And yet, when my fertility clinic called me to let me know the transfer was cancelled, my first thought was, “Of course it is. Why would I have expected anything else?”  I nearly started laughing. 

Then I got overwhelmingly angry.  Not at my GC, who was dealing with her diagnosis, but with God, and Fate, and the Universe in general.  “Seriously,” I thought, “am I just not supposed to be a mother?!”

That said, this loss – and it is a loss – feels different from my miscarriages.  Although there was nothing I could have done differently during my pregnancies, I still felt guilty and culpable after every loss.  I don’t with this.  Our cancelled transfer is plain old bad luck.  I am not responsible.  Interestingly, to my husband, the differences we not so pronounced.  He felt equally upset about our own losses, as the loss of this opportunity. He reminded me that there is a great deal of space between being “fine” and being “devastated” and that I still needed to practice self-compassion and self-care. 

So, after the news the last week I did the following:  First, I made myself a pan of brownies and ate it all myself.  Second, I repainted my bathroom cabinets.  Whenever I experience loss and feel out of control, I develop an urgent need (compulsion?) to make forward progress in another area of my life.  This time it was home remodeling.  Third, I binged on some TV and movie favorites – re-watched Fleabag and made repeat viewings of Call Me By Your Name.  Lastly, I drank Champagne.  I had been saving the bubbles to toast a successful transfer on Thursday.  Instead, I toasted myself, my husband, our marriage, and our continued perseverance.  We haven’t found our pot of gold at the end of the rainbow yet, but we’re still looking for it.